Findings from the Promoting Independence in Dementia App (PRIDE-app) Study a Reach, Effectiveness, Adoption, Implementation, and Maintenance Framework Discussion.

INTRODUCTION: Self-management is pivotal in helping people with their independence and in managing their health conditions more effectively. The PRIDE-app is a novel online intervention, providing support and information for people living with dementia and their families, aimed at increasing self-management and improving quality of life. Knowledge generated will help inform future developments to the app, with the aim of improving its uptake and implementation in services. METHODS: A mixed-methods approach incorporating the RE-AIM framework. Recruited 25 people living with dementia, of which 17completed the PRIDE-app intervention over 8 weeks with support from a dementia adviser facilitator. Measures exploring mood, physical well-being, and quality of life were collected at baseline, 3 and 6 months and analysed through modelled analysis. Post-intervention interviews were conducted with participants and facilitators and analysed through thematic analysis. RESULTS: Quantitative results did not show significant improvements in participants' scores. Qualitative data showed that the PRIDE-app motivated people to reconnect socially and set individual goals for activities. Participants and facilitators identified areas for improvements to the app interface and delivery format. CONCLUSIONS: This study evaluated the PRIDE-app's reach, effectiveness and adoptability in the independence and quality of life of people living with dementia, as well as how it could be implemented and maintained within services. Pre- and post-intervention scores were inconclusive. Interviews provided positive feedback of the app's influence on peoples' activities and mood.

Online peer support for people with Amyotrophic Lateral Sclerosis (ALS): a narrative synthesis systematic review.

Background: Amyotrophic Lateral Sclerosis (ALS) significantly impacts the lives of people with the diagnosis and their families. A supportive social environment is important for people with ALS to adopt effective coping strategies and health behaviours, and reduce depressive symptoms. Peer support can provide a supportive social environment and can happen in-person and online. Advantages of online peer support are that people can engage from their own home, at their own time and pace, and that it offers a variety of different platforms and modes of communication. Objectives: To (1) explore the benefits and challenges of online peer support for people with ALS, and (2) identify successful elements of online peer support for people with ALS. Methods: The method selected for this systematic review was a narrative synthesis. Six databases were systematically searched in April 2020 for articles published between 1989 and 2020. The search was updated in June 2022. The quality of the included studies was assessed with the Critical Appraisal Skills Programme qualitative research checklist. Results: 10,987 unique articles were identified through the systematic database search. Of those, 9 were included in this review. One of the main benefits of online peer support was that people could communicate using text rather than needing verbal communication, which can be challenging for some with ALS. Successful elements included using profile pages and graphics to identify others with similar or relevant experiences. Challenges included ALS symptoms which could make it difficult to use technological devices. Conclusions: Peer support can provide a non-judgmental and supportive environment for people with ALS, in which they can exchange experiences and emotional support, which can help people in developing adaptive coping strategies. However, ALS symptoms may make it more difficult for people to use technological devices and engage in online peer support. More research is needed to identify what kind of specific barriers people with ALS experience, and how these could be overcome.

Correction: The Development of a UK Culturally Adapted and Modified Version of the Person Attuned Musical Interactions Manual: Protocol for a 2-Phase Mixed Methods Study.

[This corrects the article DOI: 10.2196/43408.].

Optimising Online Peer Support for People with Young Onset Dementia.

People with Young Onset Dementia (YOD) can be hesitant to engage with online peer support. This work aims to explore (1) why people are hesitant to engage in online peer support, (2) how to get more people involved in online peer support, and (3) what makes online peer support work well. Nine interviews with people with YOD were conducted on MS Teams. Participants were recruited through purposive sampling. Data were analysed thematically. Reasons for being hesitant to engage with online peer support include being unsure what to expect and concerns about seeing others in more advanced stages of dementia. Additionally, it can be difficult to identify groups that suit one's needs and interests. Group facilitators of online peer support groups should provide a detailed description of their group so that people can better assess whether the group would suit them. The insights obtained from this study will be used to develop a Best Practice Guidance on online peer support for people with YOD. Moreover, the findings can be useful for further research exploring how to support people with dementia in general in accessing online health and social care services.

Online Singing Groups for People With Dementia: Adaptation and Resilience in the Face of the COVID-19 Pandemic.

INTRODUCTION: At the start of the COVID-19 pandemic, people with dementia living in the community experienced the sudden loss of their usual activities, and videoconferencing was widely adopted by music groups whilst face-to-face sessions were not possible. This paper reports the findings of a proof-of-concept study of online singing for people living with dementia and their carers, focusing on the experiences of the participants. METHOD: People with dementia and their care partners were invited to take part in 10 weeks of online singing sessions. Each session lasted 1 hour, and comprised time for talking, warming up and singing familiar songs. Participants completed standardised outcome measures at baseline and after 10 weeks. Dyads were invited to take part in a semi-structured interview. RESULTS: In total, 16 pairs were recruited. The response to the online singing group was mostly positive. Participants were able to use the technology to join the sessions, and reported few technical problems. Despite the limitations of online singing, the experience was frequently reported to be enjoyable. Some participants described longer-term benefits, such as improved mood and better relationship between care partners. Some felt online sessions had advantages over face-to-face ones; for example, they were more accessible. However, participants who had previously been attending face-to-face sessions felt that the online singing was a "better than nothing" substitute. CONCLUSIONS: Online singing cannot recreate the experience of group singing face-to-face, and it requires some technical knowledge, but it provides a worthwhile alternative in a time of need for some people with dementia and their carers. Furthermore, for some people online singing may be preferable due to its accessibility. Given the potential for online singing to include people who cannot go out for any reason and its relatively low cost, providers may wish to consider hybrid online/in-person singing groups in future.

Development of the Music Therapy in Transition to Long-Term Care Model.

Transition to long-term care can be a challenging period for older adults, with high risk for negative outcomes, including depression, anxiety, and fear. However, music therapy has the potential to enhance related protective factors because it emphasizes individual strengths by leveraging culture-specific resources, facilitates relationships and a sense of belonging through joint music-making, and provides opportunities to process and make sense of one's experiences in the "new normal" through sharing of music-related emotions. The purpose of this study was to explore the perspectives of older adult long-term care residents, their care team staff, and their music therapists to develop a conceptual framework for the role of music therapy in older adults' transition and adjustment to long-term care. A grounded theory approach was used to conceptualize this process. Interviews with 17 participants were transcribed and analyzed using open, axial, and selective coding. The resulting theoretical model describes a progression of qualities and benefits of music therapy that leads to residents "feeling their best self." Related categories include: Music therapy is accessible and engaging; Music therapy is personal and meaningful; Music therapy acts as a bridge to other resources; Music therapy facilitates transformation; and Music therapy facilitates community integration. This initial theoretical model provides a foundation for clinical assessment and interventions. Future research is needed for continued testing and refining this theory.

Person-attuned musical interactions (PAMI) in dementia care. Complex intervention research for constructing a training manual.

Introduction: Music is of vital importance for cognition, human care, and the formation of social communities throughout life. Dementia is a neurocognitive disorder that affects cognitive domains, and in late-stage dementia, care is needed in all aspects of daily living. Within residential care home contexts, carers play a significant role for the "caring culture" but often lack professional training in verbal and non-verbal communication skills. Thus, there is a need for training carers to respond to the multidimensional needs of persons with dementia. Music therapists use musical interactions but are not trained to train carers. Therefore, our aim was to explore person-attuned musical interactions (PAMI), and additionally, to develop and evaluate a training manual to be used by music therapists when supporting and training carers in non-verbal communication with persons with late-stage dementia in residential care home contexts. Research process: With a realist perspective and systems thinking and within the framework for complex intervention research, the research group integrated several overlapping subprojects by applying a non-linear and iterative research process. Core elements related to person-centered dementia care as well as learning objectives were considered through the following four phases; Developing, Feasibility, Evaluation, and Implementation. Results: The result was a training manual for qualified music therapists to use when teaching and collaborating with carers about how to implement PAMI in dementia care. The manual included comprehensive resources, a clear structure for training, defined learning objectives, and integration of theory. Discussion: With increased knowledge about caring values and non-verbal communication, residential care home cultures may develop carer competencies and provide professional attuned care for persons with dementia. Further piloting and testing to examine the general effect on caring cultures is needed.

The Development of a UK Culturally Adapted and Modified Version of the Person Attuned Musical Interactions Manual: Protocol for a 2-Phase Mixed Methods Study

BACKGROUND: Previous research has suggested that care home interactions need significant improvements, especially those between staff and residents with dementia. Reasons for the lack of interactions are staff time pressures and residents' language impairments. Although residents may experience reduced language abilities, they can continue to communicate through other forms, including nonverbal communication and music. Person Attuned Musical Interactions (PAMI) is a staff training tool that provides staff with music therapy skill-sharing to promote high-quality interactions between staff and residents using nonverbal communication and music. The tool was originally developed in Denmark. To ensure that the tool is appropriate for UK care homes, a team of researchers in the United Kingdom have modified and culturally adapted the tool. OBJECTIVE: This study aims to investigate the appropriateness of the adapted and modified manual for UK care homes and to explore the impact of PAMI on residents with dementia and care staff. METHODS: The project consists of 2 phases, a qualitative field-testing study and a mixed methods evaluation study, which have been developed following the Medical Research Council's guidelines for complex interventions. Care staff and residents with dementia will be recruited from care homes in Lincolnshire, where the care staff will be trained in the PAMI intervention before implementing the intervention in their daily routines. Fortnightly reflective sessions will be provided throughout the phases to provide supervision and monitoring. The qualitative methods include interviews, reflective session transcripts, diary entries, and resident experience questionnaires. The quantitative outcome measures are residents' music engagement, staff's dementia competence, residents' quality of life, and staff burden. The resident's music engagement will be administered at 9 fortnightly time points. Staff's dementia competence, resident's quality of life, and staff burden will be administered at preintervention and postintervention time points. RESULTS: The study has been funded by The Music Therapy Charity as part of a PhD studentship. The study began recruiting in September 2021. The research team aims to publish the results of the first phase in July to September 2023 and those of the second phase in October to December 2023. CONCLUSIONS: This study will be the first to investigate the modified version of PAMI. Therefore, it will provide feedback on the appropriateness of the manual for UK care homes. The PAMI intervention has the potential to offer high-quality music intervention training to a larger population of care homes who may currently be restricted by finances, the availability of time, and a lack of training opportunities. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/43408.

A Web-Based Self-management App for Living Well With Dementia: User-Centered Development Study.

BACKGROUND: Self-management, autonomy, and quality of life are key constructs in enabling people to live well with dementia. This population often becomes isolated following diagnosis, but it is important for them to feel encouraged to maintain their daily activities and stay socially active. Promoting Independence in Dementia (PRIDE) fosters social inclusion and greater dementia self-management through an interactive handbook. OBJECTIVE: This study aimed to develop a paper-based PRIDE manual on a web-based platform. METHODS: Two overarching stages were used to create the web-based version of PRIDE. The first was Preliminary Development, which encompassed tendering, preliminary development work, consultations, beta version of the website, user testing and consultation on beta version, and production of the final web-based prototype. The second stage was Development of the Final PRIDE App, which included 2 sprints and further user testing. RESULTS: Through a lengthy development process, modifications were made to app areas such as the log-in process, content layout, and aesthetic appearance. Feedback from the target population was incorporated into the process to achieve a dementia-friendly product. The finished PRIDE app has defined areas for reading dementia-related topics, creating activity plans, and logging these completed activities. CONCLUSIONS: The PRIDE app has evolved from its initial prototype into a more dementia-friendly and usable program that is suitable for further testing. The finished version will be tested in a reach, effectiveness, adoption, implementation, and maintenance study, with its potential reach, effectiveness, and adoption explored. Feedback gathered during the reach, effectiveness, adoption, implementation, and maintenance study will lead to any further developments in the app to increase its applicability to the target audience and usability.

A Preliminary Psychometric Case Study of the Music in Dementia Assessment Scales: European Portuguese Version (Midas-PT).

INTRODUCTION: Music in Dementia Assessment Scales (MiDAS) is a standardized outcome measure aiming to capture the effects of music-based interventions in patients with dementia. It is a unique instrument regarding its specificity, with the potential to enhance research in the field of music in dementia care. The aim of this study was to report a preliminary psychometric study of the translated and adapted instrument to European Portuguese (MiDAS-PT). MATERIAL AND METHODS: Care home residents with dementia attended bi-weekly group music-based interventions, for five weeks. Intervention coordinators and care home staff completed MiDAS ratings at every session and the Quality-of-Life Scale (QoL-AD) at three time-points. Inter-rater reliability, test-retest reliability, internal consistency, concurrent validity (QoL-AD) and construct validity were evaluated. RESULTS: A total of 529 forms were completed (staff = 235, therapist = 294). Low therapist inter-rater and test-retest reliability, good internal consistency, low concurrent validity, and good construct validity were found. There were high factor loadings between the five MiDAS items (Interest, Response, Initiation, Involvement, and Enjoyment). CONCLUSION: This preliminary investigation indicated acceptable psychometric properties on a range of attributes, but more research is needed in order to definitely establish the psychometric value of the scale.

Understanding Barriers and Facilitators to Online and App Activities for People Living With Dementia and Their Supporters.

BACKGROUND: Stigma often surrounds people with dementia when it comes to use of computer technology, although evidence does not always support this. More understanding is needed to investigate attitudes and experience in relation to computer technology use among those living with dementia and their readiness to use it to support self-management. METHODS: An online self-report questionnaire was completed by adults living with a dementia diagnosis and those living with them. Questions explored how long the participants had been using computer technology; how regularly they used it; the popularity of common communication apps; and whether they were interested in using an app to support their independence. RESULTS: 47 participants with dementia and 62 supporters responded to the questionnaire. There were no obvious differences between those with dementia and supporters when it came to regular technology usage and both groups showed positive attitudes to the use of it for independence in dementia. CONCLUSIONS: There was active use of computer technology among this population. Benefits were shown to include communication, increasing individuals' understanding of dementia diagnoses, and enabling independent activities for both those with dementia and supporters.

Peer support through video meetings: Experiences of people with young onset dementia.

BACKGROUND: People with young onset dementia can experience stigmatization and social isolation. Peer support provides an opportunity for social connection and support. However, access to in-person peer support groups varies across the UK, and during the COVID-19 pandemic in-person peer support groups moved online. OBJECTIVES: We explored the experiences of people with young onset dementia attending peer support meetings through online videoconferencing platforms, and identified barriers and facilitators. METHODS: A focus group study with existing peer support groups for people with young onset dementia that had their meetings online was conducted. Participants were people living with young onset dementia. Participants were recruited through convenience and purposeful sampling. Initial contact was made with the group facilitator to discuss the study purposes and assess eligibility of the group members. The data was analysed thematically by two independent researchers, using an inductive approach. FINDINGS: Four focus groups with UK-based peer support groups were conducted through the group's usual platform, including 20 participants. Through online peer support people stayed connected during the pandemic. It provided opportunities to meet people from different places and be involved in research projects. People found it a convenient way of connecting with others without having to travel. However, some missed in-person interaction and digital exclusion and challenges to navigate different platforms were identified as barriers. Organisational skills of the facilitator and support with getting into meetings can help overcome these challenges. CONCLUSION: Online platforms can make peer support more accessible for people with young onset dementia as it overcomes geographical barriers as well as barriers for those who feel uncomfortable attending an in-person group. Researchers and policy makers should explore how to implement and overcome barriers to online peer support, so that peer support is more widely accessible and clearly signposted to people with young onset dementia.

Online Peer Support for People With Multiple Sclerosis: A Narrative Synthesis Systematic Review.

BACKGROUND: People with multiple sclerosis often experience depression and anxiety, negatively affecting their quality of life, especially their social life. Peer support, whether in person or online, could improve social connection and coping. Online peer support allows people to engage from their home at a time that suits them. We sought to explore the benefits and challenges of online peer support and to identify successful elements of online peer support for people with multiple sclerosis. METHODS: Using the narrative synthesis method, 6 databases were searched in April 2020 for articles published between 1989 and 2020; the search was updated in May 2022. The quality of the included studies was assessed using the Critical Appraisal Skills Programme qualitative research checklist and the Downs and Black checklist. RESULTS: Of 10,987 unique articles identified through the database search, 11 were included. Benefits of online peer support included sharing information and experiences and emotional support. Successful elements included having a dedicated space to save information and the convenience of online peer support. Challenges included verification of information and the lack of nonverbal communication. CONCLUSIONS: Online peer support can help those unable to access in-person support groups and can reduce the risk of social isolation. However, multiple sclerosis symptoms may make it difficult to use technological devices. Research is needed to further explore potential barriers to online peer support.

Development of Best Practice Guidance on Online Peer Support for People With Young Onset Dementia: Protocol for a Mixed Methods Study.

BACKGROUND: Many people with young onset dementia (YOD) may feel isolated. Peer support has the potential to improve social health, but the inconsistent availability of age-appropriate, in-person (peer) support services for people with YOD suggests that many people with YOD miss out on the potential benefits. Online peer support could be useful, as it overcomes geographical barriers, offers a variety of options, and adjusts to various needs and preferences. OBJECTIVE: Our study aims to develop evidence-based best practice guidance on online peer support for people with YOD and group facilitators to improve online peer support for people with YOD. METHODS: Our mixed methods study consists of 4 phases and follows the guidelines of the Medical Research Council on complex interventions. Each phase consists of multiple substudies. The study focuses on the development stage of the Medical Research Council framework and additionally develops a plan for the feasibility/piloting, evaluation, and implementation stages. The participants are people living with YOD and peer support facilitators. The qualitative research methods include interviews, focus groups, and open questions in a web-based survey. The quantitative methods include a web-based survey consisting of existing outcome measures. RESULTS: The study is funded by the European Union's Horizon 2020 research and innovation program under the Marie Sklodowska-Curie Actions - Innovative Training Networks (H2020-MSCA-ITN-2018; grant agreement number: 813196), and it received ethical approval from the London Bromley Research Ethics Committee (reference number: 21/LO/0248) in April 2021. Recruitment started in May 2021. Data collection and analysis are expected to be finished by September 2022. CONCLUSIONS: The best practice guidance can provide people with YOD with tailored and evidence-based information about online peer support, and it will be disseminated locally (in the United Kingdom) and internationally through dementia organizations, research networks, and academic institutions. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/38379.

Online Peer Support for People With Parkinson Disease: Narrative Synthesis Systematic Review.

BACKGROUND: Parkinson disease (PD) significantly impacts the lives of people with the diagnosis and their families. In addition to the physical symptoms, living with PD also has an emotional impact. This can result in withdrawal from social roles, increasing the risk for social isolation and loneliness. Peer support is a way to stay socially connected, share experiences, and learn new coping skills. Peer support can be provided both in person and on the internet. Some of the advantages of online peer support are that it overcomes geographical barriers and provides a form of anonymity; moreover, support can be readily available when needed. However, the psychosocial impact of PD is still underresearched, and there is no systematic synthesis of online peer support for people with PD. OBJECTIVE: This review aims to explore the benefits and challenges of online peer support and identify successful elements of online peer support for people with PD. METHODS: The method selected for this systematic review is narrative synthesis. A total of 6 databases were systematically searched in April 2020 for articles published between 1989 and 2020. The quality of the included studies was assessed using the Critical Appraisal Skills Programme qualitative research checklist and the Downs and Black quality checklist. RESULTS: A total of 10,987 unique articles were identified through a systematic database search. Of these 10,987 articles, 8 (0.07%) were included in this review. Of the 8 studies, 5 (63%) were of good or high quality, 2 (25%) were of medium or fair quality, and 1 (13%) study was of poor quality. Web-based platforms included discussion forums, a web-based virtual world, and Facebook groups. Most papers reported on text-based communication. The included studies reported on sharing social support and personal experiences. Successful elements included increasing similarity between members and offering the opportunity to directly ask questions to a physician. Challenges included members leaving without a warning and PD symptoms hindering the use of technology. CONCLUSIONS: Peer support can improve social support and help people with PD in living meaningful and satisfying lives. Peer support is unique and cannot be replaced by family members, friends, or health care professionals. Online peer support can be a solution for those who do not have access to an in-person support group or whose PD symptoms restrict them from travelling. However, research on the personal experiences of those who engage in online peer support and potential barriers in accessing it remains limited. Future research could use qualitative methods to explore these fields further.

A Self-management App for People Living With Mild Dementia (PRIDE): Protocol for a Pre-Post Feasibility Study.

BACKGROUND: With the rapid increase in the prevalence of dementia in the United Kingdom and beyond, the emotional, social, and economic burden on individuals, families, and health care services continues to rise. Currently, interventions that enable people living with dementia to better manage their condition and achieve a good quality of life are needed. OBJECTIVE: This study aimed to explore how the Promoting Independence in Dementia (PRIDE) app can promote and support the self-management of people living with mild dementia. METHODS: Feasibility of a pre-post study design incorporating the Reach, Effectiveness, Adoption, Implementation, and Maintenance framework will be studied. We will use up to 6 National Health Service Trusts as research sites and the Join Dementia Research website and accept self-referrals to recruit 60 to 90 people living with mild dementia. Participants will complete the PRIDE app intervention over 8 weeks with support from a dementia adviser facilitator. Measures exploring mood, physical well-being, and quality of life will be collected at baseline and at follow-ups at 3 and 6 months. Facilitators and National Health Service staff will be invited to complete interviews shortly after the intervention phase. RESULTS: Data collection began in June 2021 and is predicted to cease by the end of August 2022. Analysis of the quantitative measures will explore the impact of the PRIDE app on participants' independence, mood, and quality of life. Interview data will discuss participant experiences, how the use of the app affected them, and if it has the potential to be successfully implemented and maintained in dementia services. CONCLUSIONS: This study will show the potential reach, effectiveness, and adoption of the PRIDE app intervention in the lives of people with mild dementia. The findings from this study will inform future research on the PRIDE app and any further developments to improve its effectiveness. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/33881.

Analysing the use of music to facilitate social interaction in care home residents with dementia: Narrative synthesis systematic review.

INTRODUCTION: Individuals with dementia residing in care homes can rely heavily on care staff to access activities and meaningful interactions. Previous research suggests that care home interactions can be short, fragmented and task-orientated due to staff workload and residents' language impairments. However, music has the potential to be an alternative communication form that remains intact in the later stages of dementia. This systematic review aims to explore how care home music interventions can facilitate social interactions. METHODS: A narrative synthesis was conducted to explore the mechanisms behind how and why care home music intervention facilitate social interactions. The four-element framework guided analysis; (1) Developing a theory, (2) Developing a preliminary synthesis, (3) Exploring relationships, (4) Assessing robustness. FINDINGS: The final synthesis included 23 articles. The studies consisted of music therapy sessions, personalised music listening, structured music singing or instrument playing sessions and music therapeutic care. Despite the difference in music interventions, most studies reported an increase in residents' sociable verbal and non-verbal communication and a decrease in unsociable communication. Music interventions allowed residents to reminisce, express themselves, focus and connect with others. DISCUSSION: The studies highlighted music interventions are accessible to all residents with dementia despite their impairments. The adaptability allows individuals to continue to connect and express themselves even when language deteriorates. More research is needed into the enablers and barriers to implementing interventions into practice, as this systematic review has highlighted that some form of music intervention for all residents can be highly beneficial. Care homes use of music could increase social interactions and meaningful activities.

Conceptualizing attunement in dementia care: a meta-ethnographic review.

BACKGROUND: Engagement in non-verbal communication positively influences well-being of persons with dementia, but requires good communication skills from caregivers. An important element of non-verbal communication is attunement, but even though communication is essential for persons experiencing severe cognitive decline, attunement has not been systematically examined in dementia care. METHOD: A meta-ethnographic review was conducted to investigate the concept of attunement in dementia care. RESULTS: Six qualitative studies met the inclusion criteria. Three interwoven themes formed a line-of-argument describing attunement with persons with dementia; (1) Taking the perspective of the person with dementia and the importance of person-centred approach, (2) Developing understanding through an empathic approach and (3) Using musical parameters in the interaction: Tempo adjustments, timing and the use of music. CONCLUSION: The results bring new knowledge about reciprocity and musical elements in non-verbal communication in dementia care and how these elements potentially increase well-being of persons with dementia.

Exploring the Role of Web-Based Interventions in the Self-management of Dementia: Systematic Review and Narrative Synthesis.

BACKGROUND: The increasing prevalence of dementia has promoted a move toward equipping people with the skills required for greater self-management of the condition to enable a better quality of life. Self-management encompasses numerous skills, such as goal setting and decision making, which aim to improve an individual's physical and mental well-being when they live with long-term health conditions. Effective self-management may lead to increased well-being and quality of life. Reviews of web-based and app-based interventions have suggested that they have the potential to provide self-management support for people living with a range of conditions, including dementia. OBJECTIVE: The aim of this review is to explore the existing use of web-based or app-based interventions that facilitate or support self-management in dementia and discuss their effectiveness in promoting self-management and independence. METHODS: A total of 5 electronic databases were systematically searched for relevant articles published between January 2010 and March 2020. Included studies were appraised using the Downs and Black checklist and the Critical Appraisal Skills Program qualitative research checklist. A narrative synthesis framework was applied using tables and conceptual mapping to explore the relationships within and among studies. RESULTS: A total of 2561 articles were identified from the initial search, of which 11 (0.43%) met the inclusion criteria for the final analysis. These included 5 quantitative, 4 mixed methods, and 2 qualitative studies. All the included articles were of fair to high quality across the two appraisal measures. Interventions were delivered through a range of web-based and app-based technologies and targeted several self-management concepts. However, there was inconsistency regarding the domains, often affected by dementia, that were targeted by the interventions reviewed. CONCLUSIONS: Web-based and app-based interventions for dementia can be delivered through a range of means and can target different aspects of self-management. The small number of studies included in this review report positive outcomes that seem to support the use of these interventions for people living with dementia. However, there is a clear need for more high-quality research into this type of intervention delivery and for studies that use a much larger number of participants across the dementia spectrum. Future research should consider the barriers to and facilitators of intervention adoption highlighted in this review and whether interventions can encompass the physical, social, cognitive, and emotional domains affected by dementia.

Pilot Randomised Evaluation of Singing in Dementia (PRESIDE): protocol for a two-arm, parallel-group randomised controlled feasibility study with waiting-list control.

BACKGROUND: As the number of people living with dementia grows, so does the need to provide them with adequate psychosocial support. Many people with dementia live at home with family carers, who also require social and emotional support to cope with their role. Community group singing has received attention for its potential to support people with dementia and their carers. It is postulated that singing can improve cognitive function, strengthen the bonds between care partners and help to establish social support networks. However, there is a lack of rigorous evidence of singing's benefits for this population. This study aims to test the feasibility of a randomised controlled trial of community singing in dementia, to pave the way for a larger, conclusive study. METHODS: The PRESIDE study is designed as a two-arm, parallel-group randomised trial with a waiting list control. Dyads consisting of a person with dementia (n = 80) and their carer (n = 80) will be recruited. Each dyad will be randomised either to attend 10 weeks of community group singing sessions straight away or to wait for 3 months before attending the sessions. The singing sessions will be led by experienced professional musicians and will last about 90 min, including time for socialising. The primary outcome of this study is the attainment of feasibility criteria around recruitment, retention and the acceptability of the waiting list control. Secondary outcomes include the quality of life, mood, cognition, and musical engagement of the person with dementia, and quality of life, mood, and experiences/challenges of the carer. These data will be collected during home visits at baseline, and 3 and 6 months post-baseline. DISCUSSION: Despite growing public interest in the positive effects of singing, and encouraging findings from qualitative and non-randomised quantitative studies, there is a lack of rigorous evidence. This is the first randomised controlled trial of community group singing for people with dementia in Europe, to our knowledge. If the results favour a full trial, conclusively demonstrating the effectiveness of group singing could positively affect the opportunities available to community-dwelling people with dementia and their carers. TRIAL REGISTRATION: Unique identification number in ISRCTN registry: ISRCTN10201482 . Date registered: 12 May 2020.